ABU DHABI // From babies to teenagers to adults, provision of services and support for people with autism, which has experienced a sharp rise in the UAE in recent years, is lacking across the board, say experts.
"Services for autism should start from the time when the mother is pregnant and, unfortunately, not just for autism but any disability, there isn't really much in way of prevention," said Dr Hibah Shata, the managing director of the Child Early Intervention Medical Centre, yesterday.
"We lack developmental screening and developmental assessment," said the doctor, who spoke ahead of World Autism Awareness Day which begins today.
This lack of screening and assessment of autism, which is a disorder characterised by impaired social interaction and communication and by repetitive behaviour, can lead to misdiagnosis, or, in some cases, no early diagnosis.
Without a nationwide epidemiological study on the prevalence of autism, facts are hard to come by. But healthcare providers are aware of an increase, said Marwan Abedin, the chief executive of Dubai Healthcare City.
"Worldwide occurrence of autism was this week estimated [by the Centres for Disease Control and Prevention] to be as high as one in 50 children. This is a sharp increase from an estimated one in 88 last year and one in 110 the year before," he said.
"While there are no official figures available for the UAE, it is believed that the incidence is of a similar level and is on the rise."
Dr Shata, who has seen the number of referrals at her medical centre increase over the past few years from about three to eight cases a month, added: "We don't have enough statistics to show why, how - we don't have this. We have a big research deficit."
Although some of the increase in cases across the country can be attributed to better awareness and diagnosis, more research and more support is needed, said Mr Abedin.
"With an increasing prevalence of autism in the UAE, we will experience a shortage of centres equipped to treat people - both children and adults - with the disorder," he said.
The average age of diagnosis is 18 months, although some symptoms - relating to teething and sleeping patterns - can be spotted in children as young as nine months, said Dr Bariah Dardari, a consultant neonatologist and paediatrician and head of the paediatric department at Al Zahra Hospital, Al Barsha.
Dr Dardari also highlighted lack of awareness as an issue.
"I feel that the low awareness among healthcare professionals and teachers is more of a problem than low awareness from the parents," she said.
"I will say it's a lack of teaching - even globally - and, because a lot of new findings are happening in the field of autism, I think also the medical schools [internationally] are not keeping up-to-date.
"But definitely, there is a lack of training in the Middle East medical schools."
Some practising paediatricians in the region should also undergo further training, she said.
"In the UAE, there are not a large number of paediatric psychiatrists, so we're basically relying on general paediatricians to do the diagnosis."
Healthcare professionals and providers across the Middle East should also be looking to improve early intervention services, such as psychological assessment, behavioural and speech therapy, said Dr Shata.
"There aren't many centres in the Middle East that provide good early intervention. There are few people who really understand what early intervention is; how comprehensive it should be," she said.
Ideally, said the doctor, centres should provide a programme of care that lasts between six and eight hours a day.
"You see centres providing services like two hours a week or one hour a week. It doesn't help. This is something that also is still in the growing process," Dr Shata added.
Inclusion into mainstream schools is another area that requires work, she said.
"The school system at the moment does not support inclusion. Luckily, there are some international schools that are taking some children, but not the majority. And this makes it a burden on the family."
Child Early Intervention Medical Centre works with schools, training staff to work with autistic pupils, but their reach does not extend to the curriculum, which should be altered to accommodate children with autism, said Dr Shata.
The gap in care extends to young teenagers and adults.
"When a child reaches the age of 15, 16, 17, they need to learn enough social skills to prepare them for college or university. There isn't really much offered. There are very few programmes," she said.
"Preparing adults for work, for jobs ... also, the acceptance of the society of having individuals involved in jobs is not something that you can commonly see. It's still very, very minimal."